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Wednesday, August 17, 2011


“Hey there Jim, my friend” I smiled as I extended my hand. Jim’s large Texas-sized hand grasped mine as his face lit up in a toothy grin. “Well howdy!” he replied.

Each time Jim greeted me the next phrase was the same. “Woo Wee, you’re a tall one. Nearly as tall as me.” He smiled as he raised his hand in a mock-measure of my height.

This greeting was familiar to me. It was word-for-word the same greeting I’ve shared with Jim for the nearly three years I’ve known him. Although I remember and cherish this greeting – It’s always new to Jim.

Jim has Alzheimer’s disease.

I met both Jim and his wife Annie nearly three years ago. They were living in the Houston area, in a Memory Care unit that is part of my territory as a Divisional Director of Memory Care.

Jim stands nearly 6 foot 3 inches tall and Annie was barely 5 foot. They’d raised two boys, who were now adult men with lives of their own. The very first day I met big Jim, he wasn’t having a good day. He was agitated that his son had left him in this “strange place” and taken his car keys.

Like many others before him, in my world – he wanted to “get outta here.” And, I didn’t blame him. Jim had been in the military, traveled the world, married his teenage sweetheart and been a successful farmer until both he and his wife’s dementia had progressed to the point where a secure environment was necessary. And, that’s when they came into my world.

On that first day we met the staff was a bit stressed out because Jim had been searching for a way out for a couple of days. And, much to their surprise when Jim announced to me that he wanted to “get outta here” I replied, “Well, then let’s get going. I’ll help you get outta here.” There was an audible gasp as I took Jim by the hand and escorted him towards the door.

I looked back over my shoulder at the two frontline staff members staring wide eyed. “Jim and I are getting outta here” I announced with a wink and an encouraging smile. Its okay” I whispered for their ears only. And, with that – Jim and I went out the door into the Texas sun.

Jim was used to being outdoors for much of his day, working the family farm. Jim was a strong free spirit. I related to him instantly. As we walked, he shared his anger about how his son had “dumped” him here and taken his car keys. He was convinced that same son was stealing from him and spending all his money. I nodded my head and showed empathy as I asked him to “tell me more.”

He shared and I listened. It was only when I commented on a colorful Texas plant that his anger subsided and he began telling me about the plant and how it grows. He pulled a seed from one of the bulbs and handed it to me. He told me to take it home and plant it, and explained how to care for it as it grew.

A few minutes later, Jim and I walked back into the Memory Care unit and the staff was amazed at his new outlook. I reminded them (once again) that it’s advisable to give the resident a change of scenery – when they are exhibiting exit-seeking behavior. Just getting them out of doors or into the lobby while changing the subject typically has an immediate impact on their fixation-to-flee. And, be prepared to have to do this same routine a few times a day.

Too often, I overhear staff coaxing the resident away from the door or instructing them to sit down. Or, frequently staff tries to change the subject when the resident is insistent on leaving. I consistently coach and teach staff to stop their task-oriented ways (just for a minute) and give the resident a change of scenery. Give the resident their time and attention. Listen intently. Let the resident share what’s on their mind. Don’t judge. Be a friend.

About a year after I met Jim and his wife Annie, she was admitted to a nearby nursing home. In the first few weeks, Jim was anxious and exit-seeking again. Without Annie his fragile world was even more confusing. The nursing home was only a couple of blocks away and the Dementia unit Director would walk with Jim, so he could visit his dear Annie. The outdoor walk was good for him. Seeing his beloved was even better.

After a couple of months, Annie lost her battle and passed away. Jim and the Director had made a visit, just the day before.

One afternoon, I get a phone call from the Director. Jim and Annie’s sons were “at odds” about whether Jim should make the road trip to the funeral in a town over five hours away. The one son insisted that taking Jim by car on the five hour journey followed by three days of funeral logistics was something “Dad should do.”

My heart ached instantly. Jim was my friend and as his advocate I felt it un-wise that he make that trip which had a higher potential of being frightening, confusing and exhausting for him. Neither myself nor the Director had ever met the long-distance son who was unrelenting on these funeral arrangements.

The other son, who lived locally and frequently visited, was the one who didn’t think it wise that Dad make the trip. I advised my Director to explain to the sons what the potential risks and downfalls a trip like this could have on Jim. The long drive could be challenging followed by three days of sleeping in a hotel, a non-secured environment. The sons were told that this could be problematic to them. Unfortunately, after a long wait, my Director called me back and shared with me that the battle was over – Jim would make the trip.

Those were three very long days. I even sent out an e-mail to all my friends, asking for their prayers-of-support for my friend Jim.

Several months later, I returned to that Houston community and was grateful of the greeting I received. “Well howdy! Woo Wee, you’re a tall one. Nearly as tall as me.” Jim grinned, as he reached out that familiar Texas sized hand.

We took a walk outside and he showed me the amazing garden he and the Director had planted. My heart swelled as he pointed out the okra, green beans, tomatoes and cucumbers. He pulled a few tomatoes off the vine and suggested we bring them indoors so they could “ripen up on the window sill.”

I smiled, it was good to see my friend Jim.

Sunday, August 14, 2011

Joe & Helen

I was in New Jersey visiting one of the communities that I supported as a Divisional Director of Memory Care. This particular space had a calm, soothing and welcoming vibe filled with residents from very diverse backgrounds.

There were several veterans, former school teachers and a former New Jersey Highway Patrolman. The Patrolman had survived an entire career keeping the roads of New Jersey safe. Yet, here he was, still regal and stoic and now living with Alzheimer's disease. The cruelty of the disease, often takes my breath away - and I've been doing this work for over ten years. Unfortunately, it never gets easier.

However, I decided early in my career to focus on all the amazing things I can still learn from the folks with the disease. And, trust me....the lessons are endless.

On this Jersey visit while I stood in the main living room chatting with Rachel the Director, we were approached by a gentleman. His smile was quick and his handshake was strong.  Rachel introduced me to JOE and quickly mentioned that the flame red Jaguar in the parking lot belonged to him.

I had but a mere second to come up with a snappy comeback.

You see, in the 'World of Alzheimer's',  it's a thin line between the real truth and the 'fuzzy-jumbled-vague memories. So, as a trained professional- I've become a PRO at just - 'being in the moment' with anyone I meet within the secured walls of a Dementia unit. Some days a wrinkled- faced -senior will ask for their mother or confuse me with being a relative.

And, that's okay.  I simply 'roll-with-it'. I do my best to 'be-in-the-moment' with them. The theory is, to minimize the anxiety and fear that goes along with losing your memory, it's best to let the person with the impairment be who they THINK they are and let them be where they THINK they are.

So, here I stood shaking hands with JOE and being told that his red Jaguar was in the parking lot. I smiled and said, "Gosh, don't we ALL wish we had a red Jaguar." Rachel piped up quickly, "No seriously, Joe has a red Jaguar, he goes out every morning for the paper and coffee."

Wow, either this was the most LIBERAL secured Dementia Unit on the East Coast or....there was another explanation.

Rachel explained.  JOE'S wife HELEN had Alzheimer's and instead of leaving her alone in this Dementia unit , JOE had decided to move in with HELEN. "We've been married over 55 years," JOE remarked. "I'm not about to let her go now."

The lump in my throat was overpowering.

It was then, that I met HELEN. A pint-sized, lovely lady with an impish grin and amazingly bright blue eyes. Her well maintained hair was thick and white. She was a bundle of energy and a bundle of words. She was drawn to me immediately. And I realized in a split second why it would be hard to be apart from her.

First, she complimented me on my blouse. "I just love what you are wearing," she cooed. "It's a lovely color on you." I loved HELEN instantly!

She and JOE stood close to each other and spoke over one another as they both brought me 'up-to-date' on their marriage and life journey. I learned that they'd never had children, that JOE worked for the Post Master General and that their wedding ceremony was at a Roman Catholic Church near the Jersey Shore.

It was time for lunch. JOE took HELEN by the hand and guided her to their appointed table. He helped her order her meal and kept the table laughing with various quips and witty comments. I was in awe of his commitment to stand by his wife through this un-holy part of their life journey.

After lunch, for some reason, still unknown to me - HELEN was drawn right back to me. She complimented me on my blouse again. And stood close as she shared with me, in great detail, a story about the children that her nephew and his wife had adopted. She was animated as she explained about the children and the various countries that they were from. I was mesmerized by her.

JOE stood nearby, with a loving smile on his face, he nodded his head and was equally as absorbed in the story HELEN was telling. She continued givings exquisite details about the various countries and the adopted children. "That's amazing," I said. "What countries are they from?" HELEN came up for air for a brief second as she pondered the answer.

I turned to JOE - He shook his head and muttered gently, for only MY ears to hear..."I have no idea what she's talking about."

I turned back to HELEN, who was unfazed and non-pulsed. She was back into story-telling mode....and didn't skip a beat. Again, I had to swallow hard as I tried to compose myself. JOE was so loving and so supportive - he was the MODEL spouse. Selfishly, I wanted to take him on the road with me - so that HE could help me train all the paid professionals who didn't always seem to 'GET IT' the way JOE clearly did. He was living his life in all of HELEN'S 'moments'.

My bond with JOE and HELEN only deepened as they invited me into the room that they shared. I glanced around the tidy space. One twin bed on the left side while the other twin bed was up against the window. There were cherished possessions and pictures properly placed about, playing witness to a life that was fully lived.

JOE and I sat on the bed, under the window while HELEN stood close by. She continued to speak quickly sharing super-clear details about their wedding day. JOE handed me the amazingly well-kept wedding album. We flipped through the pages and I gazed at the black and white photos of the happy, smiling and much younger version of the two seniors that were with me now.

They looked like movie stars! And, I told them so. "Oh, you can't imagine how good our photographer was," HELEN said. "JOE, what was his name again?"

I held their photo album in my hand and turned the pages gingerly as both JOE and HELEN shared stories and details about every picture. I was completely captivated.

20 minutes later, I stood to leave. HELEN thanked me for stopping by, "I know you have such a busy schedule," she commented. I looked at her...clearly she didn't know my schedule, she didn't even know what I did for a living - but, she continued to amaze me with her steady stream of clear, concise language that was surprisingly coherent sounding for someone with Alzheimer's disease.

I thanked them for the visit from the bottom of my heart. JOE turned his back for a moment and opened up a dresser drawer. "Here," he said, "please take this - you've been so kind to us, I want you to have it,"

Yes, please, you must take it" HELEN chirped.

JOE handed over a blue fleece scarf, neatly folded, that still had the sales tag attached. "JOE, don't have to give me anything," I said.

"Please, I insist. I know you are busy and you've been so kind"

"Would you like something to drink?" HELEN offered.

I reached for the scarf and clutched it to my chest. At that moment in time - it was the GREATEST GIFT anyone had ever bestowed upon me. I was near my breaking point. I'd swallowed lumps and tears all day - in an attempt to be the consummate professional. But, my eyes glazed over as I stood in their one room space filled with 55 years of treasures.

I hugged them both and promised to visit again, someday soon.
I handed the lovely blue fleece scarf to Rachel as I prepared to leave. She tucked it into her desk drawer with the promise she'd put it back, where it belonged in JOE'S drawer.

As I boarded the plane to fly back to my home I silently reflected on the power of JOE'S devotion to HELEN.

JOE'S ability to live-in-the-moment with HELEN and make her remaining days on earth as lovely as possible was inspiring. I hugged my husband extra tight that evening.

Saturday, August 6, 2011


It began with Mabel.  I’m not exactly sure what day of the week it was when I first met her but, I’m certain the month was January. Time, wasn’t really important to her and when I was with her, it wasn’t important to me either.  She didn’t depend on a calendar and she rarely, if ever, looked at the clock. 
 Mabel wore glasses and had a complexion that was smooth and virtually un-wrinkled. She had dark brown hair with patches of gray that had tight curls after her weekly visits to the beauty shop. She wore no makeup, which made her appear younger than her chronological age. I don’t know how old Mable was when we met. She never told me. 
She rarely spoke to me at all.  In fact, she hadn’t spoken to anyone, in quite some time; which is why I was taken aback the first time I heard her voice.
We were in the sitting room. The afternoon sun was warming the space and I was standing in the middle of the circle, my back to Mabel.  There were others in the room and they were all looking at me, waiting for the action to begin.  From the corner, came a staccato voice in a loud nearly shrill tone, “One, Two, Three…” I spun around to see who the owner of this outburst was….but, the voice had vanished. I glanced in Mabel’s direction. Mabel stared straight ahead, her eyes wide, her expression blank.
I began passing out the simple instruments to those in the circle. Jingle bells for some, maracas’ for others. Our music circle would begin shortly. Once again, the voice broke through the stillness, strong and emphatic….”One, Two, Three….”  This time, when I spun around I was quite certain the words were coming from the seemingly quiet and detached Mabel. I walked over to her, “Mabel? Are you alright,” I asked as I gently touched her shoulder.  She gave no response…just a mere pursing of her lips.
As I stepped away, the voice broke the silence again. It was indeed, Ms. Mabel. I smiled. It was great to hear her voice.
When I met Mabel, she was in the later stages of Alzheimer’s disease. She was a resident at the skilled nursing facility where I worked as an Activity assistant. When she wasn’t lying in bed, Mabel was lifted by no-less than two people into her wheelchair.  Mabel had been in an advanced stage of Alzheimer’s disease  for quite some time by the time I came to know her.  Her hands were in a permanent clenched position that usually rested uncomfortably on her upper chest, just under her chin. Mabel couldn’t eat, drink, dress or bathe without assistance. She was what’s known to professional caregivers as ‘Total Care’.  I found her fascinating.
Her big brown eyes, although fixed into a constant glare-like trance, still glistened and danced when enticed to do so. Mabel barely spoke, but those eyes had much to say.  The private room that was her home was filled with family pictures and mementos from years gone by. Mabel had family and Mabel was loved.
Mable’s inability to speak in full sentences never stopped me from talking with her. Yes, I did all the talking, but I was convinced that Mabel knew exactly what I was saying.  I held her hand and told her about the weather. I would give Mabel a daily weather report and share details about my life.  Some days I got choked up when I sat close to her bed and held one of her family photos up for her to see. I never actually met one of her family members in person, but their presence was everywhere.
On that sunny day, in the sitting room as the other residents anxiously awaited our music circle activity to begin, I pressed ‘play’ on the boombox and the recognizable rhythm of a familiar tune burst through the speakers. I stood in the center of the circle coaxing, enticing and encouraging the residents to shake their hand held instruments and move to the music. Before long we were singing, humming, laughing and enjoying.
Mabel was in the music circle but unable to hold an instrument. Her gaze remained fixed and her lips remained pursed tightly shut. Undeterred, I approached her while I shook the maraca’ and sang the familiar tune. My smile was large and my heart filled with love for my friend Mabel. And, out of the corner of my eye I saw the movement. I quickly looked down, just in time to see Mable’s slipper-covered foot, tapping in time with the music, as it rested on the foot pedal of her wheelchair.
Yes, Mable was moving to the music in the only way she was able. My heart skipped a beat while it swelled with pride. In an instant, Mabel taught me a valuable lesson. Regardless of what Alzheimer’s disease had done to her body. Regardless of what abilities had been robbed from her. On that day, in that moment, with familiar music playing while an activity assistant sang off key – Mabel tapped her foot and kept time with the beat. And that was music to my ears!